A child's decision: Heaven over hospital

Chat with us in Facebook Messenger. Find out what's happening in the world as it unfolds.

Photos: A child's decision: Heaven over hospital

Julianna Snow died in June of an incurable disease. She was 5. Her parents honored her wish to die at home instead of heading to the hospital for painful treatments that weren't likely to save her.

Hide Caption

1 of 14

Photos: A child's decision: Heaven over hospital

Julianna, who had Charcot-Marie-Tooth disease, once had nearly full use of her arms but eventually couldn't hold even a small toy without help. Here, her mother, Michelle Moon, brushes her teeth.

Hide Caption

2 of 14

Photos: A child's decision: Heaven over hospital

Steven Snow's mild case of Charcot-Marie-Tooth disease manifested as a severe case in his daughter, Julianna.

Hide Caption

3 of 14

Photos: A child's decision: Heaven over hospital

Counseling helped prepare her brother, Alex, 7, for his younger sister's death. He asked whether his mom's heart would stop beating when his sister died because she would be so sad.

Hide Caption

4 of 14

Photos: A child's decision: Heaven over hospital

Julianna spent the last months of her life in her "princess" room. Sometimes, she pretended her bed was a magic carpet.

Hide Caption

5 of 14

Photos: A child's decision: Heaven over hospital

Michelle said that if Julianna became ill, she would ask her again whether she wanted to go to the hospital or heaven, and "we'll honor her wishes."

Hide Caption

6 of 14

Photos: A child's decision: Heaven over hospital

Julianna's disease had attacked the nerves that controlled her muscles, including those that controlled her breathing.

Hide Caption

7 of 14

Photos: A child's decision: Heaven over hospital

Julianna was rarely without her breathing mask. The pressurized mask pumped air into Julianna's lungs.

Hide Caption

8 of 14

Photos: A child's decision: Heaven over hospital

Julianna loved to wear colorful dresses and have her nails painted. There was even a nail bar at her funeral, along with a cupcake bar.

Hide Caption

9 of 14

Photos: A child's decision: Heaven over hospital

At one point, Julianna ate food. In the last months of her life, her chewing and swallowing muscles were so weak, she ate through a tube in her stomach.

Hide Caption

10 of 14

Photos: A child's decision: Heaven over hospital

Initially, Julianna's parents arranged for braces on her ankles and feet in the hopes she might walk one day. Eventually, they understood that day would never come.

Hide Caption

11 of 14

Photos: A child's decision: Heaven over hospital

Julianna showed no envy toward Alex, who raced up and down the hallway and did martial arts around her.

Hide Caption

12 of 14

Photos: A child's decision: Heaven over hospital

Her mother has made sure Julianna understood that going to heaven meant "dying and leaving this Earth." She also told her it meant leaving her family for a while, but they would join her later.

Hide Caption

13 of 14

Photos: A child's decision: Heaven over hospital

"Love is a superpower. It makes the bad guys good," Julianna used to say. At her tea party funeral, her father said, "From love, you can have faith; you can have hope; you can have peace."

Hide Caption

14 of 14

Julianna Snow died of an incurable disease at age 5. Her parents honored her wish to die at home instead of heading to the hospital for painful treatments that weren't likely to save her. Click here to read her story.